Chapter 2: Communication and Collaborative Practice in the Palliative Context

Introduction

As you saw in the previous chapter of this module, palliative care is fundamentally multidisciplinary in nature. This means professionals from a range of disciplines work collaboratively to provide care to a single patient and their family. In order for multidisciplinary teams to provide effective palliative care, communication - both within the team, and between the team and the patient and their family - is essential. In this chapter, you will study communication and collaborative practice in the palliative context. This chapter begins with an overview of the multidisciplinary context of palliative care. It progresses to exploring the variety of barriers to effective communication in the palliative context, the challenging communication situations nurses working in this context may encounter, and the facilitative skills nurses can use to improve their communication with patients and their families. Finally, this unit considers the key palliative care planning documentation which can be used to support and enhance communication and collaborative practice in the palliative context.

The multidisciplinary nature of palliative care

As you saw in the previous chapter of this module, palliative care is fundamentally multidisciplinary in nature. This means professionals from a range of disciplines work collaboratively to provide care to a single patient and their family. Remember: professionals who provide palliative care include general and specialist nurses and doctors, allied health practitioners (e.g. pharmacists, physiotherapists, social workers, etc.), counsellors / psychologists, hospice staff, respite staff, grief / bereavement workers, chaplains and complementary therapists etc. Each of these different professionals has different (though often overlapping) roles and responsibilities when planning and providing palliative care; consider the following case study example:

As you saw in the previous chapter of this module, nurses also play a crucial role in the palliative care context. You should revise the palliative care nurse's role from the previous chapter, if required. 

Read the following quote from a patient who received palliative care in the UK:

"I can make the last stage of my life as good as possible because everyone works together confidently, honestly and consistently to help me and the people who are important to me".

(National Council for Palliative Care, ND)

Communication in the palliative context

Communication is an integral part of nursing practice in all health care settings, and it is particularly crucial in the palliative care context. Good communication is the basis of high-quality palliative care because it facilitates patients' active decision-making; as you saw in the previous chapter of this module, involving patients (and their families, where appropriate) in the provision of their care is a fundamental aspect of effective palliative care. There is research to suggest that poor communication can have significant negative consequences for the patient and their family - for example, it causes psychological distress, results in poor compliance with treatment, reduces quality of life and increases dissatisfaction with care. Poor communication is the cause of a significant number of complaints related to end-of-life care in the UK.

Communication in the palliative care context can be complex. Nurses in the UK frequently use 'blocking behaviours' to prevent further discussion about, and exploration of, a patient's issues and concerns related to palliative care. These are often unconscious behaviours, and used with the best of intentions, but they can have a variety of unintended negative consequences. Consider the following case study example:

In the above case study, the patient hints at her concerns about receiving chemotherapy. The palliative care nurse attempts to reassure her, but in doing so blocks further discussion about, and exploration of, her concerns. Essentially, the nurse normalises and minimises the patient's concerns. Instead of having the desired effect of reducing the patient's distress, this approach is likely to leave the patient feeling unheard, frustrated and upset. 'Blocking behaviours' - such as the 'premature reassurance' demonstrated in the above case study - are often used by nurses with the best of intentions - for example:

• Due to a concern that a patient may be harmed as a result of open, honest communication.
• Because the nurse wishes to spare the patient - and, so, themselves - from distress. 
• Because the nurse feels it is not within their scope of practice to discuss the issue, or that they may be asked questions they cannot answer (e.g. "How long until I die?").
• Because of a belief that the patient's concerns are inevitable and unresolvable.
• Because of a fear of saying the 'wrong' thing and receiving a complaint.
• Because of a fear that the patient may not be able to cope with the truth.

Patients in palliative care settings must be provided with complete, accurate information about their condition - even if this is likely to cause them some distress. Strategies nurses working in palliative care contexts may use to facilitate positive communication with patients in difficult situations, such as that described in the above case study, will be explored in greater detail in a later section of this chapter.

It is important to highlight that nurses working in the palliative care context are often required to 'break the bad news' to the patient and / or their family - that is, to inform the patient and their family that further curative treatment for their condition is likely to be futile, that their condition is life-limiting and that palliation to improve quality of life is the recommended course of action. These can be some of the most challenging conversations a nurse will have with a patient in the palliative care context. When conducting these conversations with a patient and / or their family, a nurse should:

• Provide factual information, and relate this information to the individual patient.
• Provide information in small 'chunks', and then check for understanding (e.g. "Does that make sense so far?", or "I've just given you a lot of information; it would help me if you could repeat this back to me so that I can check we're on the same page").
• Ensure the setting in which the conversation is to take place is appropriate (e.g. a private room, free from distractions, with adequate room for support people, etc.).
• Gain an insight into the patient's overall understanding (e.g. "Can you tell me what you have been told so far?", "What do you understand about your condition?", etc.).
• Invite the person to opt out of full disclosure, if they choose to do so (e.g. "Are you the kind of person who prefers to know all the details about what's happening?").
• Handle these conversations with empathy (as described in more detail later in this chapter).

In addition to speaking with patients about their death, it is essential that nurses working in the palliative care context speak with patients about their wishes for palliative care - including their wishes for care during death. Contrary to popular belief, research suggests that patients often find it reassuring to speak about and plan for their own death, particularly with trusted health care professionals. Early discussions about end-of-life care are important, because as a patient's terminal condition progresses they will often find it difficult to participate in discussions and make decisions. Before approaching a discussion about end-of-life care, it is important that nurses have some understanding of the patient's culture (e.g. their worldview, and their philosophies and preferences about living and dying, etc.), their social situation, and their readiness to engage in palliative care planning. Nurses must be familiar with their organisation's policies and procedures for speaking with patients and their families about palliative care plans.

When communicating with patients and their families in the palliative care context, nurses will often be communicating with people who are experiencing strong, complex emotions - including anger, grief and distress, etc. When communicating with people who are experiencing strong, complex emotions, there are a number of important strategies a nurse can use to ensure their communication is effective:

• Recognise the presence of the emotion (e.g. "I can see you're very upset").
• Legitimise the emotion, and provide the patient with 'permission' to express it (e.g. "It's okay to feel angry; many people would feel the same way in your situation").
• Collect important information (e.g. "Can you tell me what makes you feel this way?").
• Focus on the person's emotions, and convey empathy (as described earlier in this chapter).
• Apologise to the person, if it is appropriate to do so.
• Negotiate a way forward together with the person, if it is appropriate to do so.

When communicating with patients and their families in the palliative care context, nurses may also be aware of complex situations such as collusion. Collusion occurs when people cooperate in a conspiracy in order to deceive others. Consider the following case study example:

As with the blocking behaviours discussed earlier, collusion is often attempted because of a misguided belief that keeping the patient uninformed about their condition and prognosis will assist with their psychological wellbeing. However, whilst providing a patient with false optimism may be initially helpful, once it becomes clear - as the patient's illness progresses - that this optimism was provided dishonestly, this often results in even more significant negative psychological impacts for the patient, including a lack of trust in the multidisciplinary team. Furthermore, it hinders palliative care planning, which can be problematic if a patient loses their decision-making capacity prior to communicating and documenting their wishes for end-of-life.

There are a number of ways a nurse working in a palliative care setting may manage collusion:

• Use an empathetic approach to understand the relative's feelings about the situation.
• Clarify the relative's reasons for wishing to withhold information from the patient.
• Identify with the relative the negative impacts of withholding information.
• Propose to the relative that the patient is given some awareness; explore this idea.
• Negotiate with the relative an ongoing plan for providing information to the patient. 

Another complex communication situation which nurses in palliative care contexts are required to effectively manage occurs when a patient or their family have unrealistic expectations for care. Included in this is the idea of denial, where a patient or relative refuses to accept the terminal nature of the patient's condition and the need for palliative care. Consider the following case study example:

There are a number of ways a nurse working in a palliative care setting may manage unrealistic expectations, including denial:

• Acknowledge the enormity of the information the patient has been given.
• Explore the patient's perspective on their condition, prognosis and death generally.
• Gently challenge inconsistencies in the patient's perspective (e.g. "You say your illness is not serious, but you have just completed radiotherapy treatment…").
• Propose a hypothetical question to explore the patient's goals and significant issues (e.g. "Have you thought about what might happen if things don't go as you hope?").
• Offer the patient the opportunity to receive a second medical opinion if they do not accept the futility of medical treatment and the recommendation for palliative care.

When communicating with patients and their families in the palliative care context, nurses may also encounter complex questions from patients and their families - such as those related to life expectancy. Consider the following case study example:

It is important to highlight that there is no clear consensus about how to respond to complex questions, such as those related to life expectancy, which have no definite answer. A nurse should be guided by their organisation's relevant policies and procedures. As a general guideline, nurses should:

• Acknowledge the significance of the question to the person.
• Explore the person's perspective on their condition, prognosis and death generally.
• Avoid giving an exact timeframe, and discuss the challenges of predicting survival; it may also be appropriate to discuss the expected trajectory of the patient's disease.
• Explore the impact of uncertainty, doubt and insecurity on the person.
• Offer the person continued support (e.g. "No matter what lies ahead, the team will be here with you, and we will continue to provide care according to your wishes"). 

Facilitating positive communication in the palliative context

The previous section of this unit described a variety of strategies a nurse may use to respond to challenging communication situations in the palliative context. There are also a number of general communication skills - referred to as facilitative skills - that nurses working in palliative care settings may use to improve their communication with patients and their families. These skills must be used with intent - that is, consciously and actively throughout the course of the nurse's day-to-day work. The purposeful use of these skills at appropriate time will help to promote a patient-centred approach, mutual understanding, and improved satisfaction with care. These skills include:

• Active listening. This involves listening fully to the patient with the aim of identifying, understanding and acknowledging the (often subtle) message/s they are communicating.
• Summarising. This involves stopping a conversation with a patient at regular intervals to review the key points covered. This is useful in ensuring that the nurse and the patient have a shared understanding; it is also useful in demonstrating to the patient that they have been heard and understood.
• Paraphrasing. This is similar to summarising in that it allows a nurse to review the key points of the conversation, demonstrate their understanding and provide the patient with an opportunity to correct any inaccuracies. Consider the following example:

• Empathy. This involves attempting to understand how the patient may be feeling, and to convey this understanding to the patient. It can be thought of as  'walking in the patient's shoes', or attempting to identify with their experience. It is important to remember that a nurse can never completely understand how another person is feeling, even if they have experienced a similar situation themselves or have cared for other patients in similar situations. Nurses can, however, communicate what they understand about the patient's experience - for example, using phrases such as: "I can see this is very difficult for you", or "I imagine this is very frightening", etc. 
• Clarifying. This involves using a question to prompt a patient to further explain something they have mentioned. Consider the following example:

• Silence. Among people from Western cultures silence may seem uncomfortable, and nurses may feel an urge to fill the silence in a conversation with a patient. However, it is useful to consider what may be going on for the patient during periods of silence - often, they are processing and reflecting on the complex information they have been provided with. Some periods of silence in a conversation can be beneficial.
• Acknowledgement and encouragement. A nurse may acknowledge what a patient has said by using intonations that demonstrate interest and understanding (e.g. "Okay", "Mmm", etc.). A nurse may encourage a patient to continue discussing a topic by using phrases such as: "Could you tell me more about that?", "Please go on", etc.
• Picking up on cues. It is important that nurses working in palliative care contexts are able to pick up on 'cues', or subtle hints which suggest  patient may have an underlying concern they are finding difficult to discuss. There are a number of cues which are particularly relevant to the palliative care nursing context:
  • A patient may use indeterminate statements (e.g. "I manage", etc.).
  • A patient may use neutral statements (e.g. "I had surgery", etc.).
  • A patient describes psychological symptoms, such as 'worry' or 'stress'.
  • A patient is unclear or evasive about the physical symptoms they experience.
  • A patient may be vague or indirect when answering a nurse's questions.

Palliative care planning documentation

As highlighted throughout this module, involving a patient in decision-making related to their care, and providing care consistent with a patient's wishes and preferences, is a crucial aspect of palliative care nursing. There are a number of key pieces of 'advance care' documentation which are used to record the wishes of patients in relation to their palliative care, whilst they are still competent to make these decisions. These documents help guide nurses and other health care staff in the provision of palliative care, particularly when a patient lacks capacity to make decisions about, and / or communicate their wishes for, care provision.

There are strict rules about when and how advance care documentation is created; generally, all advance care plans are created collaboratively by the patient, their family and members of the multidisciplinary team. Advance care documentation can only be developed by a patient who is competent to make decisions; as described in the previous chapter of this unit, it is important that nurses working in palliative care settings are familiar with their organisation's policies and procedures related to assessing a person's decision-making capacity. There are also rules about when and how advance planning documents are enacted (generally, only when the patient loses the capacity to make decisions), and whether they are legally-binding. It is important that nurses working in palliative care contexts are familiar with their organisation's relevant policies and procedures, and the advance care planning in the jurisdiction in which they practice.

• Advance statements, also referred to as 'statements of wishes'. These are documents which indicate an individual's preference for care; they explain what types of care a patient considers to be important to them (e.g. their daily routine, food preferences, religious beliefs, etc.). Advance statements are not legally binding, however they are used by health care professionals to support decisions about what may be in a patient's best interests.
• 'Do not attempt resuscitation' (DNAR) orders. As described in the previous chapter of this module, DNAR orders authorise health care staff to withhold cardiopulmonary resuscitation (CPR), should a patient's condition deteriorate, and so allow their death. A DNAR applies only to CPR, and no other life-sustaining treatments.
• Advance decision to refuse treatment (ADRT) documents. ADRT documents provide a legally-binding record of a patient's informed consent to withhold or withdraw certain treatments - including those which may sustain or prolong their life - in certain situations. ADRTs relate to all life-sustaining measures other than CPR - including the provision of nutrition and hydration, the use of ventilation and the prescription of potentially life-saving medications such as antibiotics, etc. ADRT documents allow a patient to be specific about the circumstances in which they would not want a treatment to be given, or in which they would want a treatment to be stopped.
• Proxies for health care decision making. In the UK, Lasting Powers of Attorney are people who are legally appointed to make decisions on behalf of a person about certain matters. In palliative care settings, many patients choose to assign specific decision-making rights over to a trusted person, often a relative. Powers of attorney may be:
• Health and welfare powers of attorney, which make decisions for a patient about things such as their daily routine, where and how they are cared for, and treatments provided to sustain the patient's life, etc.
• Property and financial powers of attorney, which make decisions for a patient about things such as collecting benefits, paying debt and selling property, etc.

It is important that nurses working in the palliative care context initiate early discussions about advance care planning with a patient who has a life-limiting illness. This is helpful in ensuring the patient's wishes for care are identified and documented prior to the losing their decision-making capacity. It is important to highlight that patients in palliative care settings are often unclear about the type of end-of-life care they wish to receive, and that it may take them some time to settle on decisions with which they feel comfortable.

It must be noted that there is no standard advance care planning documentation in use in the UK; nurses must be familiar with the advance planning documentation used by the organisation in which they work. Advance care planning documentation, once completed, must be distributed to all those involved in the care of the patient, both in inpatient settings and in the community (as appropriate), in addition to other relevant people such as the patient's family (including the next-of-kin), primary carer and solicitor, etc. It is essential to note that a patient has the right to change their advance planning documentation at any time throughout the course of their illness, provided they retain the competency to do so.

Conclusion

In this chapter, you have studied communication and collaborative practice in the palliative context. This chapter began with an overview of the multidisciplinary context of palliative care. It progressed to exploring the variety of barriers to effective communication in the palliative context, the challenging communication situations nurses working in this context may encounter, and the facilitative skills nurses can use to improve their communication with patients and their families. Finally, this unit considered the key palliative care planning documentation which can be used to support and enhance communication and collaborative practice in the palliative context.

Reference list

Brighton, L.J. & Bristowe, K. (2016). Communication in palliative care: Talking about the end of life, before the end of life. Postgraduate Medical Journal, 92(1090), 466-470.

Caswell, G., Pollock, K., Harwood, R. & Porock, D. (2015). Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: A qualitative study. BMC Palliative Care, 14(35). Retrieved from: http://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-015-0032-0

Faull, C., de Caestecker, S., Nicholson, A. & Black, F. (Eds). (2012). Handbook of Palliative Care (3rd ed.). Hoboken, NJ: Wiley-Blackwell.

Macmillan Cancer Support. (2012). The Macmillan Palliative Care Collaborative. Retrieved from: http://www.macmillan.org.uk/documents/aboutus/health_professionals/macmillanpalliativecarecollaborativereport.pdf

Marie Curie. (2016). The Hidden Challenges of Palliative Cancer Care. Retrieved from: https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/february-2016/hidden-challenges-palliative-cancer-care-report.pdf

Matzo M. & Witt Sherman, D. (Eds). (2010). Palliative Care Nursing: Quality to the End of Life (3rd ed.). New York, NY: Springer Publishing Company.

Oishi, A. & Murtagh, F.EM. (2014). The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: A systematic review o views from patients, carers and health care professionals. Palliative Medicine, 28(9), 1081-1098.

Sleeman, K.E. (2013). End-of-life communication: Let's talk about death. Journal of the Royal College of Physicians of Edinburgh, 43(1), 197-199.

The King's Fund. (2010). End-of-Life Care. Retrieved from: https://www.kingsfund.org.uk/sites/files/kf/field/field_document/end-of-life-care-gp-inquiry-research-paper-mar11.pdf

Thomas, K. (2016). Community Palliative Care. Retrieved from: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/Library,%20Tools%20%26%20resources/ABC%20Palliative%20Care.pdf